March is All About the Colon! #coloncancer #lynchsyndrome

Linda Zercoe —  March 16, 2015 — 6 Comments
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March is Colon Cancer Awareness Month. I don’t know why it is not called Colorectal Awareness Month.

It is only the middle of the month as I write this and the ‘colon’ has been everywhere in my life. I have Li-Fraumeni Syndrome and a predisposition to cancer – basically anywhere – with a multiple family member history of colon cancer and precancerous polyps. The screening protocol for my Syndrome recommends biennial screening with a colonoscopy after age 40 or beginning 10 years before the age of any family member with a history of colon cancer.

So on March 5th I began my FIVE-day prep for my biennial colonoscopy. This was the 4th or 5th time I was having this procedure. The five-day prep includes eating a low-residue diet for four days (completely contrary to how I normally eat – think white and not a rainbow). The fifth day and morning of the procedure was clear liquids only with some restrictions. I am required to have a double prep of SuperCleanse and this includes drinking four bottles of SuperCleanse coupled with tons of water.

All in all it wasn’t too bad, better than Go-Lytely and a few other preps that have ‘failed’ in the past. I have a ‘tortuous’ colon, which means that it is longer and has lots of loops, twists and turns. I laughed years ago when I learned this and wondered if it had anything to do with not being put back together properly during a few surgeries or was it a metaphor for having periods of my life where I was being twisted up in knots from stress!

This year I had two polyps removed and I am currently awaiting pathology results. Two years ago I had two polyps removed that were called ‘hyperplasia’. Four years ago I had one ‘normal’ polyp removed and also a LEIOMYOMA removed that was the size of a sesame seed. I am thankful that was found and removed and hadn’t become a leiomyosarcoma! Leiomyosarcoma is a malignancy that arises from connective tissue including the GI tract that is NOT your typical Colon Cancer!

More than 95% of colorectal cancers are a type of cancer known as adenocarcinomas. These cancers start in cells that form glands that make mucus to lubricate the inside of the colon and rectum. Other types of cancers that can occur in colon and rectum include gastrointestinal carcinoid tumors, gastrointestinal stromal tumors, primary colorectal lymphoma, leiomyosarcoma, melanoma and squamous cell carcinoma. (See http://www.cancercenter.com/colorectal-cancer/types/)

While all of this has been going on, I finally connected with a woman, Georgia Hurst, who is a front line advocate for another hereditary cancer disorder called Lynch Syndrome. Lynch Syndrome is caused by a different genetic mutation than BRCA1 or 2 or Li-Fraumeni Syndrome. “Lynch syndrome, often called hereditary nonpolyposis colorectal cancer (HNPCC), is an inherited disorder that increases the risk of many types of cancer, particularly cancers of the colon (large intestine) and rectum, which are collectively referred to as colorectal cancer. People with Lynch syndrome also have an increased risk of cancers of the stomach, small intestine, liver, gallbladder ducts, upper urinary tract, brain, and skin. Additionally, women with this disorder have a high risk of cancer of the ovaries and lining of the uterus (the endometrium). People with Lynch syndrome may occasionally have noncancerous (benign) growths (polyps) in the colon, called colon polyps.”(see http://ghr.nlm.nih.gov/condition/lynch-syndrome)

Among many duties, Georgia is a strong advocate and educator on Lynch Syndrome and is prolific on social media. Per her website “We areholding our 3rd #Lschat on Sunday, March 22, 2015, in honor of Lynch Syndrome Awareness Day.  Please join me, Ellen from My Gene Counsel, and Amy Byer Shainman for the chat. Dr. Allyson Ocean, a gastrointestinal medical oncologist from NewYork-Presbyterian Hospital/Weill Cornell Medical Center and medical oncologist at The Jay Monahan Center for Gastrointestinal Health will also be joining us as our guest commentator to answer your questions regarding colon cancer. 

Her web site and blog about colon cancer and Lynch Syndrome can be found at http://www.ihavelynchsyndrome.com. Her Twitter handle is @shewithlynch if you would like to follow her. I for one will be hooked into her tweet chat on 3/22!

Screening by colonoscopy is the best method to detect colon cancer at an early stage! Get screened!

Biopsy results later today!

6 responses to March is All About the Colon! #coloncancer #lynchsyndrome

  1. The pleasure is all mine.

    Yours,
    g

  2. I too had a colonoscopy this March! I got my results last Friday. Three polyps, 2 non-cancerous and one pre-cancerous (first time having polyps). I’m praying you get good news Linda!

  3. Thank you for getting the word out!
    Colon cancer is one of the few reliable tests we have that can detect
    pre-cancerous growths and help prevent cancer. I put my first one off until I was 57 because I was afraid of the prep( have a strong gag reflex and thought I would be vomiting from the liquid one has to drink). The expectation is often much worse than the reality, and I got through it. In a roundabout way, two years before my next colonoscopy needed to be done( I was on the 10 year schedule), my bloodwork showed I needed to have a colonoscopy in 2013. They found a benign mass at my sigmoid colon and 12 inches of the sigmoid section was removed. I had another colonoscopy this past October to see the remainder of the colon ( they couldn’t get past the lower part of the
    colon because of the mass) and all was well. Needless to say, while still not a joy, I was now a veteran of the prep( still, nothing like what Linda has to do!!). Simple message: get it done! It can save your life. It’s available and all insurance covers it.
    Really glad we have this test. Wish there was a test for all cancers before they had a chance to become embedded in our bodies.

  4. Kathleen Gibbons March 26, 2015 at 1:10 pm

    Thank you again Linda for your timely advice. You have convinced me that I do need to be screened (I never have been) and that it can be a life saving procedure. My Doctor also thanks you too. My family thanks you as well. Your blog not only educates but is a catalyst for change. Please don’t stop!

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